Cushing's Awareness Day

So I am a newbie here. I didn't know that April was the month to write a post everyday for 30 days for Cushing's awareness. I am 8 days late but I will try to catch up. Who's counting eh? Lets talk about symptoms and progress. Oh yeah thanks Marian for updating me on this!!

It's been almost 10 months since my adrenalectomy. Symptoms I still have is rapid heartbeat for certain things. Food can trigger it, high activity, social anxiety and caffeine. It's not as bad as before but it still happens maybe 2 or 3 times a week. No more panic attacks! YAY! No more paranoid feelings when I am out. The depression is much better. I find myself enjoying life more. I am socializing again and doing more of my hobbies. My menses come once every two months. I am getting more tired lately and extra unmotivated to get things done. I don't know if it is related but before I could multitask and wake up early but now it feels impossible to get out of bed. My memory is getting pretty crappy. The short term memory is bad. I repeat things and lose things that are right in front of me. Everyday is a struggle. Can't remember what I am studying and my textbook is a puzzle to me. I will be getting a brain MRI in a week to figure out why I am having headaches every night and the memory problems. THE STRUGGLE IS REALLLL lol hmmm.. weight is still stable. I am eating lots of fast food, takeout and restaurants. I have mad sugar cravings. Still get faint often.. The nurse says I have low blood pressure so i guess that's why I will eat a cookie then crave another piece of chocolate. SIGH I hope this won't make me gain weight once my hormones regulate.. I have absolutely no motivation to eat healthy and go workout or be productive versus before surgery I was working, going to school, eating super healthy and working out. Now I have to find great effort to do simple things. My bones still hurt, I tried to squat and heard my knees crack and pop and it hasnt stopped cracking ever since so I guess no squats for me. lol I will probably get a fat ass from eating all these carbs i'm inhaling anyway. The hairy-ness is sooo much better. This guy in my class said he hates hairy arms and asked to look at mines and said I had nice hairless arms. HA! He should have seen me a year ago. I was a furry hamster... But yeah I shaved my whole body and the hair growth is much thinner and almost blonde so that is very good progress. The acne is better as you saw in my last video.. But I still get pimples here and there so I still feel paranoid about that. The hair on my head is filling up nicely. Just got a fresh cut and now my hair feels so soft! Okay there's so more stuff but I don't remember so I will post a better blog next time. I am a little distracted right now =] Here's some pics of my haircut and progress pic!

Loving this hair. I did not change my color this is a box color from walgreens =]

Recovery is a beautiful roller coaster. Hello dimple, never thought I would see you again.

Feeling Better? A Good Surprise

Alright I'll admit I've been bad since my last entry.. I got curious to how I would do on a lower dose of steroids and self experimented. I took 27mg umm let's just say I didn't do too well. Yes I'm stubborn lol, although I'm not dying so I think I can handle it. I'll just keep it that way til the next visit to the docs which is in a month or so? Supposedly the magic number to stimulate the adrenal gland is 12-15 mg. I still have a long way to taper down... I think I might be feeling better? I see some improvement on some things and less in others. I guess I need to feel or see a huge difference to believe it but I am now livin life in the slow lane lol. We had some unexpected house guests this week.. lol

Vankey, Fatty &       ^^Tiny

Ever since the operation I haven't been feeling well or keeping track of the days going by. Yesterday there was a knock on the door I thought it was some delievery package and it was my best gal Jessica  holding some beautiful flowers. I forgot we planned months ago that she would come back one last time from Maryland to visit and I even wrote it down on my memo. Blame it on the short term memory! lol.. This will be the last time I see her for a while since she's in the airforce and will be relocating to Korea then Japan. I wanted to make a little memorabilia collage for her and found some old pictures of us through the years. Looking back at old photos is funny, I looked so dorky in the homecoming picture and what was I thinking going so blonde!! lol x]

2004

2006

2012

Today

I will miss her, & so proud of everything she's accomplished!

LOVE love yourself

I recently talked to some women who have recovered from Cushing's and they have been so helpful with giving me insight on how to be a Cushie and how to recover from it. So thank you ladies. One thing that struck out is that all of them told me I need to love myself more in order to have a good recovery. For some reason, most Cushie's blame themselves for becoming this way including myself. I spoke with a lady named Julie and she said "I think the most important thing I want to tell you is to not beat yourself up over what has happened.  Cushings is a medical problem.  You did nothing to deserve it; it just happened.  You will recover but the process will be slow.  You must be very kind to yourself as you recover.  You must surround yourself with people who love and support you." Thank you so much for telling me that Julie. 

So far my symptoms are somewhat under control besides the muscle and joint pains. My awesome doc prescribed some beta blockers that has been helping the anxiety feeling and rapid heart beat. My lovely boyfriend has been giving me massages at night so It helps plus I try not to be on my feet for longer than thirty minutes. Also My wonderful sister has been coming over to help with whatever I need to do in the day time. The memory loss and lack of focus is an issue but oh well I prefer not to remember much these days anyways lol. Before knowing about my condition I thought all these symptoms were due to me getting older and use to joke about it but truly feel like a senior citizen now lol.  Another helpful advice I got was to not fight it and get frustrated but rather have acceptance that some things I simply cannot do I don't have control over and it is okay. it's just temporary. It's okay to have others do things for you in the mean time. For the longest I have been pushing myself to work, study, drive, cook, clean, run errands, going out with friends or seeing family. Seeing friends and family is the worst because they have so much expectations and for some reason they want to be too involved suggesting too many things but hearing all their assumptions of "oh you must feel this way" "oh you need to do this and that" is not very helpful because they have no idea the mental aspect of this syndrome. Yes online there are lists of what a cushing's patients physical symptoms are but there should be a long list of the mental, cognitive, emotional signs and symptoms. I no longer have the energy to explain to people what goes on in my brain of how this syndrome causes me to feel. That I can only be around certain people who are with me 24/7 or from day one who do not trigger my panick attacks since they understand how to handle it. I now have to limit conversations with my mom. I know with family it's from a place of sympathy and love and I love them to death but for a cushie, it just feels overwhelming... All the women i've spoken to told me the fastest thing that recovers after surgery is that their state of mind changed instantly and the anxiety was gone. So I look forward to having that normal feeling back. whatever "normal" is since I thought all of these feelings were normal but they aren't.

 I've always given in to expectations of others and myself because I don't want to lose control over what I can and cannot do but I think It's time for me to know my limits and see it as a step to loving myself more. I found some videos and other fellow recovering cushie's that's been so instrumental to me.

- sharmyn's story youtube
-Steph's picture timeline
-Cushing's disease, moods, bi-polar youtube
-puremoonlite's recovery youtube